Friday, March 2, 2012

My stepfather is turning 60 and my brother is turning 30 five days apart. My stepfather didn't have any children until he was 54 (us) so you should see him doing family stuff. All he wants for his 60th birthday is to go to Las Vegas with his family, me, my brother, his wife, my mom, and my grandma. It's kinda sad he doesn't want his family to come too, but that's another story.

After the debacle where we went to Hawaii in 2010 and all we took was my dilapidated Quickie, every time this idea has been mentioned, all I can say is "my chair, my chair, my chair..." Having traveled twice independently with a powerchair (all the other times were with a manual), most recently 5 weeks ago, I know the drill and can do this confidently.

I'm happy to report that my parents are ok with this; that they've thought through some of the logistics and recognize the importance of my independence. They understand the utter frustration I felt in Hawaii, and care that I can enjoy myself as much as possible.

My mobility has declined over the past 4 years, and I feel like my ability to walk was somewhat subconsciously tied to my independence. At least it was in my head... I'm concerned that my mother is upset with me on some level. She put a lot of time, energy, and money into something I'm letting slip away. Am I leading the life she wanted for me? I think so, but it's different then either of us could have imagined.

We sat at dinner and my parents (who have been to Las Vegas, I haven't) told me of all the places I would need my chair. It sounds like I'll be sitting all day. I can't just use it to get somewhere and then dump it in the corner -- it was $13,000 afterall. And they're ok with that, which leaves me kind of shocked. Oddly I am not ok with it. I am thinking of the physical pain this causes, the exacerbation of my spasticity. But I'll figure something out. My brother doesn't take his ritilan when he goes on vacations, and he's always had fun with this stuff. He can drive my chair.

Over the years my chair has become a part of me, an extension of my independence, and after all I did to actively fight it, I guess I'm still surprisingly having to revaluate my identity to include it. Why else would I think this was so odd?

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I'm 26 and am working part time as a Peer Support Specialist (psyc disability related) while I figure out what I'm doing with the rest of my life. I have cerebral palsy and bipolar II and I blog about my experiences with this because 1) I have a loud mouth and I like to use it 2) all the writing keeps me sane & 3) I value the community.
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